Roger B

Roger has been involved in health and medical research in sarcoma since he became a patient advocate in 2002. He also founded Sarcoma UK, a national charity that aims to provide information and support for patients with the condition, and raises funds for research.

After Roger was diagnosed with sarcoma, a rare type of cancer, he contacted the National Cancer Research Institute (NCRI) which was advertising for patient members for a clinical studies group. At his first meeting, he remembers feeling a little nervous and daunted by the professional researchers and clinicians around the table. Early on, he learned how important it was that meetings were chaired well. He explained that the chairperson needs to control the topics being discussed and ensure that everyone has a say. Even now before he attends a meeting, Roger will speak to the chair and tell them in advance what he would like to contribute. He said this is important because it means he doesn’t have to fight his way into the discussion with the professionals.

Since joining his first group, Roger has been a patient advocate on several other groups and is involved in research across Europe. He said research teams are about partnerships between various types of researchers and clinicians, and including a patient in these groups is just common sense; it makes you wonder why it should ever been seen as unusual. He believes patients can make professionals think twice about things they may not even have questioned before, but they need to try to be as representative as they can without losing their own specific patientness, which he thinks is very valuable. Roger suggested they could keep in touch with how others think and feel by remaining in contact with patient groups.

Over the years Roger’s PPI role has changed. Initially he was involved in reviewing studies, making sure participant information sheets were clearly written and easy to understand, and offering his opinion on the usefulness of proposed research projects. He has worked on the training courses run by the NCRI Consumer Liaison Group, which aim to improve patient understanding of drug trials by helping researchers and clinicians to think about how best to give information to patients in a way they will understand. Whilst he still does these kinds of things, Roger has become more involved at a strategic level, taking part in debates and discussions about the major issues of direction and management, including the development of PPI. He is keen to promote openness and transparency in research, which includes ensuring that all research findings are published regardless of their findings. He has been appointed as a scientific member of the NCRI, a title usually reserved for researchers and clinicians and thought this might be an acknowledgement of the work he has done over the years with the NCRI and also with Sarcoma UK, the national charity he founded that aims to contribute to research funding.

Although he has been involved in health research for over a decade, Roger still enjoys being a patient advocate. He said the experience has been rewarding and that he’s humbled by the prospect of making a difference in sarcoma research. Although it has been challenging and scary, patient and public involvement can be very satisfying and he thinks other people should get involved. He also encouraged researchers to use patients in their research, saying they’d never regret it.

Clinical research without patient involvement should be seen as unethical. Roger B wants it to be compulsory for researchers to publish their research.

Age at interview 67

Gender Male

The big thing I would like to see happen in fairly short order, the next two to five years, is the universal recognition that medical research, clinical research without patient involvement is actually unethical. I think if we can achieve that point weve made a huge step forward. I think the All Trials campaign’ the work that [Ben Goldacre] has done is absolutely superb. You know, all publication, everything should be published. I’m a believer, that, if an organisation has failed to publish the results of a study which has been finished, and has been summarised, ethical committees should actually stop them from running any more research. Let’s keep it as simple as that you know stick and carrot theres a pretty hefty stick there but the carrot is, what we need, and what we want people responding to, and, and you know the idea that, that horrific event at the, you know happened some years ago where, you know, a young member seriously, physically damaged, their lives threatened, you know in the Phase 1 study of a new agent. The fact that that could have been prevented if some research had actually been published, is, a horrible condemnation, of not necessarily secrecy, but, it’s the way it comes across. You know secret publication processes got to stop, got to stop.

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The National Institute for Health Research has played an important role in promoting involvement. The UK is now a world leader in the field.

Age at interview 67

Gender Male

So alongside your role having changed, what has changed in PPI [patient and public involvement], if anything, over the last eleven years since you’ve been involved?

Oh! The fact that it is so accepted now. I think the work that NIHR [National Institute for Health Research] has done has been, you know, really ground-breaking for the whole patient involvement community internationally. You know, I think theres little question that the UK leads the world, you know, and the work that eleven years ago, twelve years ago, we were doing in cancer is now, in disease suitable ways, replicated in diabetes and stroke and, you know, all the other themed areas, and indeed at the research network level on the ground. I think it’s absolutely wonderful. And you know all power to the elbow of people like Dame Sally Davies [Chief Medical Officer] for making it happen.

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Roger B is working to persuade pharmaceutical companies to have more patient involvement in their research.

Age at interview 67

Gender Male

And so how has your role changed over the years since you started?

Well, you think it’s stopped changing? [Laughs] No it’s still changing. Well, I think that the one big change I’d point to is that we are making inroads into the pharmaceutical industry. As a patient community, we are making inroads into pharma research. It’s slow, theres a lot of protection there understandably, there are commercial issues about commercial confidence, for example and, you know, we have to learn as patients that we have to be able to respect those sorts of issues when they arise. But, I’ve done work in the last year with three pharmaceutical companies helping them think their way through how they do, bring patients in alongside the evolution of their research strategies and their actual research studies, and I know that there are other companies as well doing the same thing because within Europe we have a, probably a fairly closed little group of about ten or a dozen of us, all of whom are doing this in little ways with individual companies and we do occasionally meet up and pool our information.

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Roger thinks that that the impact of PPI can only be measured by asking researchers.

Age at interview 67

Gender Male

And how do you think we can measure the impact that patient and public involvement has on research?

Ha ha, yes, the ultimate question. Weve struggled with that for twelve years and we still struggle with it [laughs]. I think the only way you’re ever going to be able to do this is subjectively. You’re going to have to ask investigators, particularly chief investigators, principal investigators, the ones who actually put studies together in detail, what their perception of the value is and hopefully they will do more than give the nominally appropriate answer.

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Roger B describes rewording a patient information sheet to help it get through an ethics committee.

Age at interview 67

Gender Male

Oh lord. Well, theres been quite a lot of sarcoma studies some of whom I’ve written, for example, the patient information for. I remember one instance where, the study went to ethics I knew the study was happening. I had read a summary of the protocol, but I’d never read the full protocol. It went to ethics and got rejected, and I can remember the PI coming onto me on an email saying, ‘Help!’ [Laughs] And, you know, frankly, the ethics committee was completely right, the patient information sheet was a mess. It didn’t take long to actually sort it out , you know, introducing clarity is what it’s about, you know, clarity of structure and, you know, clarity of the way information is presented was at the heart of it. And it sailed through ethics the second time round. But, you know, those sort of things are very satisfying.

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Roger B said the chair has a crucial role in ensuring peoples voices are heard, so it’s important that they’re trained to help people find the right time to tell their story.

Age at interview 67

Gender Male

I aim to manage it before the meeting starts by getting them to tell me their story so they’ve, in a sense they’ve got it off their chest once. And I’ll actually say, you know, “That’s really valuable, you know, everybody needs to understand that, you know, I’ll get you to speak at some point. Don’t do it at the introduction of the meeting, just say who you are, but I’ll get you, fairly early on in the meeting, I’ll bring you in and tell your story then.” And then it’s on the table, everyone understands it. They know where that person is coming from. They’ve got some clear ideas about the kind of experience that they’ve had and that’s valuable to the other members of the group. And I can explain all that to them and say, you know, “It’s really important to have your experience on the table but it only needs to be there once.”

What are the other crucial things that you sort of would say in training a Chair what do you think they need to know?

Well, I think that issue of the patient telling their story is one. The fact that the patient will find it very difficult to chip in in the meeting because of the kind of dynamics these meetings have, so they have got to be able to bring the patient in. Ideally that’s with the knowledge of the patient beforehand. Whether that’s been pre-agreed between them prior to the meeting or, you know, a little notice being pushed round the table or whatever it is. One of the Chairs that I work with fairly regularly used to say something like, “I’m going to ask [Roger] to comment on that in a minute.” It’d give you time to think very, very useful. So theres all sorts of little, you know, tricks that can be brought in and used in order to get, hopefully, the maximum benefit from having a patient there.

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It can be difficult to contribute effectively to a scientific meeting if it is not well chaired.

Age at interview 67

Gender Male

The one thing I learned fairly early on, is that you’re very reliant on the Chair, and a scientific meeting it has a dynamic, all of its own. People talk, they pick up a particular point, they flow and, unless the Chair is deeply controlling it, that flow is quite often uncontrolled, no less constructive for the fact that it’s uncontrolled, but very difficult for someone that’s not familiar with it to break into. So the role of the Chair becomes critical. And the, what I, the practice I developed early on, was, if I knew a topic was being discussed and I wanted to say something, I’d tell the Chairman before the meeting and, you know, catch his eye and rely on him to bring me in. And I still do that actually in a lot of meetings. You know, I’ve been at meetings for example with NICE recently, and I made it very clear to the Chair of that meeting that, you know, when he got to this particular issue I wanted to say something, so that I didn’t have to fight my way into the non-stop, barrage of words that comes from the professionals.

Is that a strategy you would advise other patients or lay members to?

Oh very definitely, very definitely.

Yeah.

I also believe that good Chairs will do that automatically, would actually turn to the patients in the room and say, you know, “Have any of you got a comment you’d like to make?” And I’ve been in the position now of chairing meetings where patients are present and that’s something I particularly make a point of doing, but sadly not every Chair will do that. But, getting there beforehand and making him aware/her aware, very important.

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People should seek out others’ views and be as representative as they can but without losing their own specific patientness.

Age at interview 67

Gender Male

And every one of those people should be encouraged to have roots outside within their specific patient community if that’s at all possible. Now, it doesn’t mean to say they have to be necessarily an active member of a national charity or anything like that but maybe they do some local work with a support group so that they can tuck into the way that, you know, other colorectal cancer patients or breast cancer patients, prostate cancer patients are thinking and feeling and behaving, and can talk to them about their involvement in clinical trials, for example, and how they’re feeling about that. Weve got to encourage our representatives to be as representative as they can, but never to lose their own specific patientness. You know, there is value in that individual patientness which is very hard to deny.

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